Barbara Daly on Establishing a Psychosocial Data Registry

Barbara Daly, PhD, RN, Professor, Frances Payne Bolton School of Nursing, Case Western Reserve University, discusses the feasibility of establishing a psychosocial data registry for patients with cancer.

For nurses, the quality of life and psychosocial challenges of a cancer diagnosis and treatment are particularly important. Preliminarily, Daly notes being surprising that many cancer centers have tumor registries that record histologic data but none recorded detailed information on quality of life. To examine this further, a study on the feasibility of setting up a psychosocial registry was undertaken.

The study found that a majority of patients with newly diagnosed cancer were willing to participate in a registry. Additionally, many of the patients agreed to being contacted in the future for additional studies. The registry gathered data on psychological, social, emotional, and spiritual aspects of quality of life for both patients and family caregivers. Daly believes this provides reliable data for future trials, with the potential of establishing a national psychosocial data registry.